Life with a Preemie

December 6, 2017

Bringing home a preemie meant that life looked a little different for us than if we were bringing home a term newborn. After a two-week NICU stay, we brought our little guy home right around his birth weight of 5lbs. 6oz. and a little over three weeks before his due date. He was actually pretty big for his gestational age but as we learned, a baby’s weight is not necessarily an indicator of their overall development.

Over the last two months I’ve jotted down some of the differences between our experience and that of parents of a term newborn. Here are a few that I’ve noted…

Ben will have an adjusted age until around age two. His adjusted age is based on his due date. On Monday he was two months old but his adjusted age is three and a half weeks old. Until he is two we will base his development on this age. Realistically he will probably be somewhere in between. For instance, right now he definitely has more neck control than a three and a half week old but not nearly as much as a two month old. He’s somewhere in between. He might catch up completely before age two. He might not.

When we first got home it felt so odd to not see his stats all the time. Since the first time I truly saw him, I’d been able to see every breath he took, every beat of his heart, right on the monitor. I’m not going to lie, disconnecting him from the monitors kind of scared me and it felt disorienting to not be able to see them at a glance. The neonatologist assured us that he would never send us home if he thought any of Ben’s stats would drop. I try not to be too anxious about it but like most new Moms (and Dads), I sometimes stare at his chest in the night to make sure I can see it rise and fall.

Ben’s immune system is less developed than a term baby. I’m not a germaphobe. Even years of working in hospitals hasn’t made me a germaphobe. But these days we have to be more careful, wash our hands more frequently, and keep hand sanitizer with us. If he spiked even the smallest fever in the first two months of his life, we would have had to go straight back to the NICU. The nurses were also adamant that Ben only be around adults who have their TDaP shot and flu shots so we had to insist that our families were up to date. This felt a little pushy and intrusive but we were told repeatedly that it really needed to happen.

In order to be discharged from the hospital we had to assure the neonatologist that we’d never let him go longer than 3 hours without eating. Unbeknownst to me, they actually tested me on this a bit at the hospital and made sure I really was getting up for every feeding and factored that in to their decision to allow us to go home when they did (one of the nurses tipped me off that I was being tested a bit).

Until two weeks ago we still had to set our alarms for every 3 hours and wake him up if he tried to sleep longer. We have finally been cleared now that he’s the size of the average newborn and has shown that he’s gaining weight appropriately and we’ve even had one 7 hour stretch of sleep!

When we went home we had to supplement every breastfeeding session with a small bottle of pumped milk. This was because he wasn’t necessarily strong enough to get all he needed and he also couldn’t stay awake. We still supplement at night sometimes if he can’t stay awake to get an appropriate feed.

We had zero clothes that fit him when he was born. Since so many people insisted that newborn size is tiny and many babies never fit in to them, I had bought nothing in newborn size. We bought lots in 0-3 months and I had always intended to buy a few newborn size items but since he was so early, I never had the chance. N’s cousin was kind enough to send us three footies in preemie size and for weeks that was all that fit our little guy. In the NICU he also wore long sleeve kimono shirts in newborn size that were actually a hand-me-down from a friend (so they’d been shrunk a bunch and subsequently were teeny). They were perfect in the NICU when he still had lots of cords on him so he just rocked that and the diaper. We later bought newborn clothes and he is just now fitting into those 0-3 month clothes.

It only took a NICU stay to convert us to the metric system! The whole time he was inpatient he was weighed in grams. I always had to convert it to tell family and friends how much he weighed in a unit that made sense to them. These days we’re so used to using milliliters to measure breast milk that we’re just sticking with it.

Weird things kind of offend me. Like when people say things like “Well at least you didn’t have to experience being overdue/super pregnant”. I’d give anything to have been super pregnant, to have a baby that didn’t need over $125k of medical care right off the bat, and to have never been in the NICU. There have been a few comments like this that just really ticked me off.

Most carriers and baby gear have minimum weight requirements so when we got home, we couldn’t use our carriers, bouncer, or swing. Basically we just held him all the time or he hung out in the Boppy newborn lounger.

I’m sure lots of newborns hate diaper changes and Ben does too. But I sometimes wonder if he associates diaper changes with getting pricked, poked, etc. and thus hates them more. In the NICU they did things all at once so he’d have his sugar checked with a heel prick at the same time as his diaper change. It would also be when they’d replace the IV if necessary (babies blow their IV’s way more often than adults). I just wonder if he has some association of unpleasantness beyond just the diaper change.

Baby bottles come with newborn or size 1 nipples. The hospital sent us home with one Dr. Browns preemie bottle. None of the bottles that we had at home (we have the Avent glass ones) were slow enough for him so we had to Amazon prime ourselves some preemie size 0 nipples for the bottles. They have a super slow flow so they don’t overwhelm him. The two nights it took those nipples to arrive we washed the Dr. Brown’s bottle so many times. We needed it every time he ate and we just had the one!

Everything I’d read said that you shouldn’t introduce a pacifier until the baby is really good at breastfeeding. Well, that was out the window because the nurses in the NICU gave him a pacifier. Luckily it didn’t cause any issues for us and in the end, I’m happy he has it because it’s a good last resort if he’s inconsolable. There are a few things like this where things weren’t done the way we would have liked or anticipated simply because we weren’t always the ones making decisions.

He slept like 23 hours a day for the first few weeks at home. Nearly no crying because he just wanted to eat and go back to sleep. Only now is he starting to have stretches where he’s awake for a while. We were chatting about it and we think he still probably sleeps like 20 hours a day.

He has had more pediatrician appointments than other kids, although frankly, I’m not sure how many more. Our first was only about 18 hours after we left the hospital. I believe we’ve had two additional appointments that other babies wouldn’t have had, just to make sure he was gaining weight.

Ben still has a bit of jaundice called breast milk jaundice, which is different than jaundice following birth (which he also had and received light therapy for). It should go away by the time he’s 12 weeks but causes him to look a little yellow in his face and upper body. This could have happened even if he was term but probably wouldn’t have.

Our newborn stage has been so much longer. I kind of loved this part. He hit about 7.5 lbs. around his due date (November 9th) so we had about 5 extra weeks of newborn squishiness. I can’t imagine how fast the newborn stage feels like it flies by for babies born at 7-9 lbs. I think it may break my heart when we have our next baby.

The thing about life with a preemie is that it’s our only experience as parents. We know certain things are preemie specific but some things might just be all newborns and are new to us because we’re first time parents. And despite Ben being five weeks early, we know we’re really lucky. In the NICU we were surrounded by lots of babies much smaller and earlier than Ben. We never take for granted the fact that we’re at home with our sweet, healthy boy.

My babies were each 6 pounders. They weren’t preemies by any means, but a lot of newborn clothes were too big for them. I actually had to run out and get some preemie onesies. I can’t imagine having a legit teeny tiny one. I thought mine were fragile at 6. Ha!

I thought of you after I posted a photo at 36 weeks saying I was ready to be done being pregnant soon – I’m sorry! But I am *so* glad that all is well for you three.

Hi, I’m Nadine. I'll try not to be a mommy blogger but that's probably where this is headed. Oh, and I'm definitely going to try to convince you that Philadelphia is the coolest. I love my husband, kid, and dog (but who doesn't?). Let's be friends.